I was hoping to use the hide feature less on Facebook now that the election has passed; however, I’m still using it regularly. I wish I could hide this ugliness from my boys – shelter them from hateful rhetoric that is literally everywhere, but obviously I can’t. This election displayed the worst of our American culture and humanity, on both sides and from every angle. I wasn’t a fan of any candidates this election had to offer. At all. It got me thinking that, perhaps if we want better candidates, we should start being better humans ourselves.

This election showed me so many things I want to teach Isaac and Eli. I want to teach my kids how to be humble winners and gracious losers. I want them to know that we don’t need to attend every argument we’re offered, nor does the world need our opinion on every single topic presented, especially when it’s not helpful. Sometimes we need to learn that shutting our mouths and walking away is our best option. I want them to learn to use their brains, not just sheepishly follow what the media or their friends tell them. I want them to respect and love people first, understanding that we don’t always have to agree to be kind. I pray they learn that we are all valuable and worthwhile, and that our differences make us unique and special.

Lastly, I’m praying for our nation, its leaders and citizens. Lord knows, we all need it.

A few years ago, a good friend, Lori Hiscock, shared Eli’s story on the GCC blog. We are so grateful to Lori for giving Eli’s perspective a narrative since he is a man of little words. I saved her email from August 6, 2014, with the story – and I’m so glad I did since I can’t find it anywhere else. Here is Eli’s story, in Lori’s words:
My Amazing Life
Have you ever sat on a fast moving boat? Have you felt the wind tossing your hair back and forth, tickling your eyelashes, making your nose tingle?

Or have you sat by a window when rain was rolling in? Did you smell the change in the air? See the softening of the world outside? Did you hear the swelling, compelling music of the drops? Drip…….drip….dripdripdripdripdripdrip and did your spirit dance along?

Or have you floated in a lake? Have you felt the soft force of the water pushing back against you as you lay there, buoyant and still for just a moment before you couldn’t hold it in anymore and you had to wiggle and wrestle with that silly water while you laughed and laughed and laughed?

Have you seen – have you really SEEN – this unbelievable world that God has made for us?

I have. My name is Eli Aquila, I’m one year old, and my life is amazing.

Some might say my life wasn’t always amazing. I was born January 13, 2013 in Louisiana, four weeks premature and very, very small. My birth mom used drugs which made me pretty sick for a while. Even then, though, with all the chills and fevers, convulsions and pain, God was still working on His bigger, better plan for me. Four states away, he heard my momma and daddy praying for a child. Praying for THE child – the one God meant for them.

God decided that this child was me so, after seven weeks in the hospital, this loving, Christ-following couple bundled me up and took me back to Granger Indiana with them as their son. See? Amazing.

I know they had dreams for my life. They dreamed of sports and dances, graduations and grandkids. As my first year went along, I saw their dreams changing. I wouldn’t eat and I wasn’t gaining weight. Their prayers shifted from long term dreams to short term battles. God, help Eli grow. God, make him strong like David. God, help us not be afraid.

While I know momma and daddy were worried, I was enjoying the warm sun and our dog and that amazing moment of the day when daddy came home from work. Even when they took me to Riley Children’s Hospital and pricked me with a million needles, the memory of the pain was gone the second momma picked me up. No temporary hurt was as awesome as patting her cheeks while planting kisses all over her face.

When the doctors finally sent us home, I wasn’t worried. I truthfully forgot about it all, like I forget most things once the moment is passed. I don’t store pains or hurts, worries or losses. I store wonder though. And people. I really love my people.

I guess this part of my nature is because of what the tests showed. One of my chromosomes is different than most peoples. They call it Angelman Syndrome, which is a neuro-genetic disorder that only one in 25,000 kids have. It’s so rare that it’s hard for the doctors to know what it will look like with me. Some kids have balance problems and physical delays. Some have seizures, developmental delays and a lack of speech development.

So far for me, I don’t feel hunger so I have no interest in eating. This is why I wasn’t gaining weight, so the doctors put a G-Tube button in my belly so that momma and daddy could feed me directly. Now that I’m not fighting feedings, I’m actually growing! That’s making mommy and daddy breathe more deeply and smile a lot more.

For me though, I’ve always smiled a lot. They say that this is part of the Angelman Syndrome too. Children with this condition are best known for being ‘excessively happy’.

Excessively happy? What is that? Truly, I don’t think that people are seeing some genetically induced happiness when they see me. I think that they are just seeing a child in the moment, experiencing all of the awe and wonder at our world that adults often miss. Even children can be distracted from the magic in God’s creation, either by pain, hunger or feelings of fear or loss. I don’t experience the interference of those though, so I get to just marvel in the gifts that surround us.

Momma and daddy still pray over me all the time. They pray that I won’t have seizures. They pray that I’ll continue to be strong, like David. They pray that they can let their dreams of what my life could have been go and step into our reality. That they can step away from loss and mourning and take their next step towards God’s bigger, better plan.

They also thank God for the way they are seeing the world differently now. They thank Him for the unbelievable beauty in the moments, the beauty that they rushed by before but now see more clearly as they look at their surroundings through my eyes. As they thank God, I smile, lift my arms and thank God with them. How could I not? My life is amazing.

This morning I wanted to share a story, written by a far superb writer than I. I was first introduced to this story, Welcome to Holland, when I was in college, studying Special Education. It touched my heart then, but holds a stronger meaning now.

Often times, people ask what our lives are like, what we go through, and it’s hard to adequately put into words. I’m grateful that Emily Perl Kingsley already did.

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Whaaaat?! Obviously it’s been awhile since we’ve written anything for many reasons. Like we’re crazy-busy. We have 2 kids now. Eli’s had some health issues and started preschool. And, you know, life and stuff.

Since we’ve last updated, we had a baby boy, named Isaac Samuel Aquila. He’s just awesome. He’s a chunky tub of fun and is perfectly healthy. We couldn’t be more in love. Isaac is obsessed with Eli, who is warming up to being a big brother.

At the end of January and beginning of February, Eli had some scary health stuff going on. He’d been fighting continual sinus infections since September, requiring 5 rounds of antibiotics. Unfortunately he was unable to fight off the infections, resulting in some fever spikes, which caused seizures. Eli had quite a lot of drop (or atonic) seizures followed by a three minute myoclonic seizure, causing us to call 911. After a few hours in the ER, we were admitted to the Peds floor for testing and observation. Later that week we were discharged with new seizure meds and a new normal, only to return to the hospital via ambulance a few day later, after 22 drop seizures in 15 minutes. His oxygen levels kept going into Destat (dropping without being able to return to normal levels independently), raising more concern. After lots of doctor consults and a complete lack of sleep, it was determined that Eli had obstructed sleep apnea caused by enlarged tonsils and adenoids. While we visited the idea of removing these bad boys in early January, the ENT wanted to wait until Eli was healthy, but as it turns out, the tonsils and adenoids were a big part of Eli’s health issues since they decreased the mucus draining (just gross), causing the sinus infections, which caused the fevers, which brought on the seizures. 😳

Still with me?! Luckily Eli was able to have his tonsils and adenoids removed. He hasn’t had a seizure or fever since. And other than a cold (thanks preschool 😜), he’s been on the mend.

What’s weird for me (and likely for J) is that in the heat of it all, I can hang. I’m able to put most of my emotions and my junk aside so I can do whatever it takes to do what is best for Eli. I communicate easily with the medical team, advocate to the point of obnoxiousness for E, and be completely present and functional on little to no sleep. Whatever it takes to make him healthy again – to bring back my sweet, happy boy. For me, when everything slows down and we resume whatever our current normal is, I have to actually deal with the stress and emotions of everything, and if I’m honest, I hate that. I’d rather lock the emotional hard stuff away and carry on with regular life. But that doesn’t ever work, does it? Angelman Syndrome can be tough on a daily basis. Don’t get me wrong, I absolutely love my son, but our life isn’t always easy. It’s difficult to relate to others, or have people identify with our situation. We are exhausted. There are struggles and insane fears that constantly loom. However, there is also a constant presence of God. He shows up in amazing and unexpected ways. We know we aren’t alone in the wilderness. He has not forgotten or abandoned us. And, most reassuring of all, He trusts us to do this specific work.

I’ve been planning this post for a while now, but just found the time to sit down and unload a bit. Since the last time we posted, our lives have changed quite a bit. We found out in early April that our son has Angelman’s Syndrome, a neuro-genetic disorder that involves developmental and speech delays, an unusually happy demeanor, and other possible issues. It’s taken quite some time to wrap my head around this diagnosis and what it means for our sweet boy and our family, along with acknowledging that our dreams and plans for the future will most likely be significantly altered. It’s been overwhelming and difficult at times for us, to say the least. On top this diagnosis, Eli had the flu in early April, causing great dehydration that required hospitalization and ultimately a surgery placing a G-tube, which ensures that Eli gets the nutrition he needs in order to grow. It’s been a busy, chaotic and stressful time.

We’ve had many friends inquire about what’s next for us or what they can do to help. Here’s a list (I like lists!) of our current status.

We’re following God and believe in His plan for our lives. We completely believe that God’s hand is on us, and we’ve been praying and will continue to pray and trust God, after all He trusted us with Eli. As scary as things have been lately, I’ve found myself praying more and more. I remind myself that worrying is the opposite of faith. Worrying means that I’m failing to believe that God is bigger than the problems I face, when I believe the exact opposite.

Eli is our son and we love him unconditionally. His diagnosis changes nothing.

We’re leaning on our family and friends. We have amazing people in our lives who have been a part of this journey. We need to continue with life as normally as possible and our family and friends allow us to do that. We will not be hiding from our lives and the things God has planned.

We are not Eli’s diagnosis. Eli is not his diagnosis. We will not limit our son or believe he is incapable of great things. We ask you to do the same. We plan to challenge Eli as any other parents would with their children.

We are blessed. While we’ve had some struggles so far this year, we find great joy in our son. He is amazing and will continue to be amazing.

What can you do to help?

Pray. Pray for Eli’s health. Pray for Eli to be seizure-free (seizures are a common characteristic for Angelman’s). Pray for strength for J and me. Pray for the doctors, caretakers and for our families. Pray for peace in our hearts.

If we’re friends already, continue to include us in your lives and the lives of your children. If we’re not friends, try not be creepy…just saying 🙂

Ask us how we’re doing, but understand we might not feel like talking about it. We’d appreciate time to just be ourselves.

Try not to research things for us. We have amazing doctors on Eli’s team. We’re trusting them. If you can’t help yourself, please only read information from http://www.angelman.org/ and http://www.mayoclinic.org . These two sites have the most correct and up-to-date information (as communicated by our doctors). Understand that Angelman’s Syndrome presents differently in each child and involves a spectrum of abilities and issues, as well.

This time last year, we began our adventure in adoption. After quite a few months of grieving and struggling through our fertility issues, we decided to meet with a great friend, Helen, to just learn a bit from her adoption, but also to gain more knowledge of the adoption process as a whole. I was incredibly intimidated by the whole thing; however, after 3 1/2 hour breakfast followed by 1/2 hour coffee, I felt like I was being nudged along a new path, a very different path than I planned and dreamed of. J and I started praying through the idea that adoption was God’s plan for our lives. The more we prayed and sought advice from family and friends, the more we felt that this was His plan for us. The ironic thing about our journey is that we tried to have a family for 3 1/2 years, constantly praying to become pregnant, but once we changed our prayer for God’s will to happen, things started happening quickly and easily…like really fast!

Which brings us to today… This has quite possibly been the best and quickest year of my life. Sure, there have been moments of struggle but they are abundantly outweighed by extreme joy. Eli is a super-happy baby and he simply makes our lives better. J and I are constantly reflecting on how amazing it is to experience things with Eli for the first time. Watching Eli witness the beauty of his first snowfall or watching him delight in the wind makes me marvel at things I’ve taken for granted for quite some time. It also makes me realize how life flies by. I’m really trying to slow down and revel in each moment I’m blessed with.

So…obviously it’s been awhile since we last posted, since which our lives have drastically changed! We brought home our son in early March and have filled all of our time to bonding with him. He is thriving and gaining weight like a champ, much to the relief of his slightly anxious parents. His pediatrician is happy with his weight gain and developmental progress since he’s come home. Currently, we fill our days with his feeding schedule, playtime, and of course, sleeping! He’s adjusted nicely to his schedule, mostly due to the wonderful NICU staff at North Oaks Hospital, where he spend his first 7 weeks of life. Eli’s been through a lot and is an amazingly strong fighter with a great spirit. We’ve been so blessed by family and friends, who’ve provided meals, gifts and endless prayers and support. We are completely in love. God is so good.